I am 21 years old and a college student just trying to survive my everyday life with Chiari Malformation, Ehlers Danlos Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder, POTS, Tethered Cord, Gastroparesis, and Interstitial Cystitis.

Thursday, March 1, 2012

What a February

I am so glad to say that the month of February is OVER! It was not a good month at all for me. So with that being said, I have not been able to update because I have been so sick and in and out of the hospital and doctors offices. I am going to go back and try and piece it together the best I can.

February 14th was the two month marker from my last surgery. We left to go to Bethesda that day so we could see Dr. Henderson for my 6 week post op visit on Friday of that week as well as a Urology appt. that I had on Thursday.

I had my Urology appt. first. They did a urodynamics test to see if I have neurogenic bladder. It was a HORRIBLE and PAINFUL test. The test came back positive for neurogenic bladder. There was no denying it. There sat the paper on Dr. Murdock`s desk that said it. It was so bad....It was off the chart. I did not only find out that I had neurogenic bladder, but that I have MULTIPLE kidney stones in my right kidney. The doctor says both of these things are very normal for Ehlers Danlos people. He prescribed medicine for both. Now to Dr. Henderson on Friday.

We sat in the waiting room to see Dr. Henderson for forever as usual (he was 2 hours behind), but trust me it is so worth it! We are called back. I tell him I'm doing good, but a few things had been bothering me.....my hardware was protruding out, my back and I was starting to get random headaches behind my eyes. Now in a perfect world he would have said "Lets fix the hardware....No big deal and Oh yeah, I can do tetherd cord surgery and you will be set for good." but, it so did not happen that way to say the least. He can not fix my hardware due to the fact that my bones have not fused completely and it would mess the graphed up, so the hardware still remains. He also was not sure I had tethered cord because it was not showing up on the MRI and X-Ray that I had. So he would not do surgery anytime soon, until he was positive that was the problem. I do appreciate that he is not just going to do surgery unnecessary, but when you are desperate and feel horrible its not what you want to hear. If I did have it, it was considered a colt which means its there, but not showing up. So since I was having pressure headaches behind my eyes he thought that I could have Inter cranial Hypertension. He said it can cause back problems too. So unwillingly I went back on the horrid drug of diamox. I was SO upset. I knew I had tethered cord, but I could not challenge him about it because it was not showing up on the scans. :( I was not a very happy person.

All of that weekend I stayed on my uncles couch complaining I did not feel good. I did not want to do anything. We set for home on that following Monday and I made it as far as Alexandria, Virgina from Chevy Chase, Maryland. I got this god awful headache and as much as I did not want to admit it was behind my eyes and it felt as if fire crackers were exploding in my head. I immediately started sobbing and vomiting. (That is not like me at all. I usually tough it out and don't complain, because if I did not all I do would complain.) We headed to the ER to meet Dr. Henderson.

The ER was a horrific experience and I refuse to ever go back. I swear everyone with a hang nail was in there. It was ridiculous. Not an empty seat in the room and I could barley sit up. After hours of waiting in the waiting room we finally got called back. I was losing it. I was given an IV which took 8 sticks to get and I mean digging around to get. I finally said you have to find someone else. I'm going to black out. My veins are completely trashed from everything throughout the years. Dr. Henderson came in and ordered tons of stuff (I'm not even quite sure what all because by that point I was on some strong medicine). He did admit me though. Again, I was not happy, but I was SO VERY VERY sick.After being admitted and finally getting a room at 2:30am, neither mom and I were very happy people. By the second day of being there he finally thought I needed tethered cord surgery. I WAS THRILLED! Not that I wanted surgery, but I just knew that's what I had and I wanted to be better and out of there. So tethered cord surgery got scheduled for Thursday. I was going crazy. I wont deny it though, Mom and I did get some good laughs while being in there.

That next day leading up to surgery seemed to last forever. Every thought of 'what if' came to mind. It was finally surgery day. It was scheduled to start at 3:30....yeah right! ha Anyway, I got prepared and cried and then cried some more. Mom was the only one able to be at this surgery. Everyone said it was going to be the easiest surgery you will have ever had.....NOT! I was preped and finally got down to surgery holding and the IV gage was not big enough. I was freaking. I knew they were not going to be able to get another one in me, So they ordered a PICC line. Then I was freaked about that, but looking back the best decision I ever made and will never not have one again. Surgery started at 5:30. Mom sat in the waiting room alone. Our dear friend Jean White showed up to sit with her. It was suppose to take two hours and it did but I was in recovery a while. I remember being in the operating room and in the recovery room and carrying on conversations with the nurses and doctors. Dr. Henderson went to confirm the surgery went well with my mother. He said the normal filem around your spinal column is .2, well my was 6! I go big or go home, that's all there is to it. My incision is only about 2 inches, but very deep. He also at that time told her my angle when he did fusion was the worst he had ever seen at 99 degrees. A normal angle is 150 degrees. Its a wonder I survived. PRAYER that's all I can say about that! While in surgery he also did a lumbar puncture to check my pressure.....its a part of the surgery. My pressure was dangerously high. It was 41 and the high end of a normal pressure is 15. Again, I go big! He removed spinal fluid to make the pressure normal. I was in very little pain and had to lay completely flat for 3 days. That is harder than it seems. I was basically spoon feed. I was discharged on Monday even though I had a headache. Dr. Henderson said drink some coffee you will be fine. I did just that and I was okay.

We left and headed for my uncles house in Chevy Chase about 30 min. away. Not even 5 minutes of being in the car I got that god awful headache again that put me in the hospital the first time, but 10 times worse. I was trying so hard to hold it in. I was NOT going to that ER. I was denying it, but I could not take it any longer. We showed up at Jeans house begging her to take us in. I could not of made it to Chevy Chase.

I literally layed flat on her couch in excruciating pain crying, screaming, vomiting, and holding my head. It took everything I had to get to the bathroom and once I was there I had to lay on the floor before I could leave. BLESS! Mom called Dr. H and said I refused to go back to the ER and what did he want me to do. Again, he said drink some coffee and lots of fluids and stay flat. He said its probably a low pressure headache because he reduced my pressure and then I took spinal fluid reducing medicine, so I did not have enough spinal fluid and it could last anywhere from two days to a week. I did not know what I was going to do. I so thought I was dying. Out of everything I have been though that was the worst by far. By day 3 I was better! Thank gosh, I literally thought I could have died at any second and did not know what was going to happen.

We stayed at Jeans through Wednesday and left Thursday Morning. I had a follow up with Dr. H Wednesday and believe me I was FIRED UP! That is not like me at all, but I knew I could NEVER handle that pain again, plus I did not want to have a lumbar puncture or take diamox in the first place. I was really challenging him and he was probably wishing I would shut up. I was throwing questions at him left and right and was telling him what I was and wasn't ever doing again. He just sat there and listened and took it all in. He even had his arm around me while I was ranting! I felt bad once we left and told mom I needed to text him and apologize, but she assured me by the look on his face he was trying not to laugh. I was so out of character. In saying all of that. I really do trust Dr. H and it was just a little mistake that was missed. I'm not mad at him. I was frustrated, yes, but I still love him and trust his opinion.

We made it home Thursday evening after 17 days of living a nightmare and ate dinner out as a family. So happy to be home and cant wait to see all my friends. I appreciate all the support. This was not a great experience, but I did make some amazing Chiari friends out of all this while I was up there. No one knows what it is like until they have lived it and it was nice to have people around who have. I know this was such a long post, but February was a long bad month that I don't want to meet up with again like that, but I would not have changed it......maybe just a few things! ;)

March has already started off amazing! Next weekend is my spaghetti dinner fundraiser and a bunch of family comes in and then I will be 18 in just 24 short days!

1 comment:

I was just thinking last night that I hadn't seen an update on here in awhile. What an amazing update this is! Sure I knew about it all, because I have been following yours and your mom's facebook and caringbridge, but to see it all in opne place is just amazing! You are so amazingly strong, and a good writer too. You had me laughing and crying as I read through your experiences. I pray every day and every night that you will finally get to live with a little normalcy. Hugs to you!!!!

I am 19 years old and I have had 12 surgeries. I have Chiari Malformation, Ehlers Danlos Syndrome, Tethered Cord, Inter Cranial Hypertension, Mast cell Activation Disorder, Interstitial Cystitis, POTS, Chronic acute Mono and Cranial Vertebral Instability. I was granted a Make-A-Wish trip in December 2012. I have an amazing support system and the best docors around. Ask me any questions or give me any advice you may have.